Now what? Steroids didn't work.

Wondering if anyone else has had an exacerbation, and after steroids nothing changed? I had did a 5-day course of IV solumedrol, and then my dr. put me on a month long taper down to not bring me down so quickly didn't put me on the Medrol dose-pack he put me on a manually prescribed taper-down.
After a month of being on the steroids I've had no improvement, and actually wonder if I got worse. I've never had to use a walker in the house, let alone a cane in the house, and now I use a walker to get from room to room.
Everything has become a chore, is this the new face of MS for me? Not looking for answers just to hear what your experiences are. I'm determined to work hard at rehab, and I try to keep a positive attitude, just looking for any input that might help put me in the right direction.
Thanks and good health to all of you,
RuC

Yeah. I was given 500mg daily of Solumedrol and it didnt help. Maybe the dosage was too low. My new neuro likes to go for the higher dose of 1 gram or more. He says that the side effects are equal, so why not get the full benefit.

I am new to this group, but I wanted to add my two cent to this thread. My Neuro said that sometimes the steroids takes weeks and even months to make a difference. In my own personal experience, I have done the whole 5 day infusion of Solumedrol and it has been over a year since the treatment. Still I am numb on my entire right side.
I went to the Neuro recently, and he noted that i am now experiencing another exacerbation, this one being the numb left hand and left foot. So, at this time, he has opted to not have me take anymore steroids. Just wait it out. So, I just wanted to tell you, that, just as MS picks and chooses different people to get different things, maybe steroids are not meant to help everyone.
Anyhow, I do wish you well.

Sherizi, thanks for your post as well. I'm also new to this group, as I thought I needed to reach out to hopefully get some answers or at least other trains of thought. I had never heard that steroids didn't work, so I'm very surprised that they didn't work on me, and more so that they haven't worked on other people as you recounted your story.

I often wonder what are we supposed to do when we have an exacerbation or what we're not supposed to do. I mean common sense would dictate to not over exert yourself. But what about the other what ifs?
Good health and good vibes to you all.
RuC

Wow I had no idea. In the past I always responded to the steroids and even while on the IV. Then as I came down a bit would have a minor set back but bounce back up a week into the orals. I guess I should count myself lucky that I was able to respond so well to them in the past.

So at this point, I went from walking around (not like years ago but was able to get around, go to the store, walk through a parking lot) to not being able to hardly walk around. Even distances with the walker are difficult.

Not sure how long before I'm able to get to wear I was pre-this exacerbation.

Gonna post another thread on a possible theory I have. But will keep this one simple.
RuC

Steroids never helped me... I got them twice - 1000 mg for 5 days and nothing. The second time I had also injected some anti-cancer drug injected into the spine - that was fun and it didn't help as well...

There are many theories about steroids and how they work...one of my neuro's says that they either work instantly or they don't work at all... The other neuro I go to says that it take weeks or even moths for them to work... For me its best not to think about it too much... Try stay calm and patient (I know its hard :). Hope that you'll get better soon...

I've had steroids twice.
First time was 5 years ago, and I felt the benefit after a couple of weeks, in that my walking improved and my fatigue lifted. After about 4 months my tingles had finally disappeared.
This time, the steroids were in May. The walking again improved after 2 weeks (albeit a different walking problem this time), but keeps giving out from time to time. I'm on a rough cycle of one week walking, one week needing a crutch to get around. I desperately hope that this is still while the steroids are doing their job and that this will get better, although in the back of my mind I know that the steroids were over 3 months ago now.
A couple of weeks after the steroids I was back in training for a week-long volleyball tournament. It could be that overdoing it so soon has set my recovery back, or that I just have to accept that this is how things will be for me now.
In the meantime, I'm looking forward to getting back to training on Tuesday. And if it isn't possible this week, I'll be looking forward to getting back to training next week.
I don't know if this helped, or whether I'm now just rambling and telling a story ;o) Sorry.
Best of luck to you and hope you're feeling better soon

I was recently diagnosed with primary progressive MS and have been told that high dose steroids via IV are one of the only available treatments. I too went downhill very qucikly after getting this treatment. One neuro said that he wouldn't give me any more steroids but left me without any treatment except for a med that he told me will not work. Another neuro feels that it is worth trying the steroids another time, so I am debating what to do.

I posted already but should add that for fours days following the IV setoids ( 4 days at 1000 mg), it was as if someone had waved a magic wand. I was MUCH better!!!! Then on day five I began to spiral down and it became harder to walk, by balance and coordination became worse and now I am actually having to use a walker to walk distances, which ia had never done before. My leg has gotten even weaker. For about two weeks my weak leg WAS actaully less weak, however, I began having bad symptoms of feeling as if my feet were encased in concrete, which I had NEVER had previously. Steroids helped breifly but then seemed to have left me worse off, so it is distressing, as there are nt a lot of treatment options for the primary progressive form of MS. Does anyone use the medications 4-AP that is suposed to help with walking? I guess that compounding pharmacies will make it for you and it has been called fampridine during clinical trials in humans over the last few years, if the FDA approves the time relased version of this medication. Hopefully, it will soon become available in the U.S. and Europe. The FDA should make a decision by November hopefully.

okay, here is the stupid question. i am always in pain from either the fibromylgia or MS. some days i only have 2 hours in me. the past two weeks have been terrible. it it time to call the doctor, or is this just the way we live.

i have no idea; the pain just immobilizes me, feel like doing nothing, and usualy do nothing. i manage to keep the house clean.
do not cook anymore.

any thoughts would be appreciated. please no platitudes--the shoemaker's son had no shoes, etc.

I am very sorry to hear that the steroids did not work well and the symptoms have not calmed down yet. I was in the hospital for a whole month doing the trial and after went to Rehab for learning to do everything again! Trust me I know what you mean about everything being a chore but with a little strenght and support, you will feel and get better versus the steroids and medication!
I have to use a wheelchair and shower chair and a bed comode which I have never used before! But you will do well(= The symptoms will come and your doctors will probable give you more meds but MS is like a roller coaster. Good Luck and my Prayers are with you
~Nerisa

When I could take steroids (I am on Tysabri now), they always worked. Yet, let me say that I did not always return to my baseline. Sometimes i had residual disability, but the worse was taken care of by steroids. This gave me enough relief to design some new creative way of dealing with decreased abilities.

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